Abstract

Background Social media may offer insight into the relationship between an individual's health and their everyday life, as well as attitudes
towards health and the perceived quality of healthcare services.

Objective To determine the acceptability to patients and potential utility to researchers of a database linking patients’ social media
content with their electronic medical record (EMR) data.

Methods Adult Facebook/Twitter users who presented to an emergency department were queried about their willingness to share their
social media data and EMR data with health researchers for the purpose of building a databank for research purposes. Shared
posts were searched for select terms about health and healthcare.

Results Of the 5256 patients approached, 2717 (52%) were Facebook and/or Twitter users. 1432 (53%) of those patients agreed to participate
in the study. Of these participants, 1008 (71%) consented to share their social media data for the purposes of comparing it
with their EMR. Social media data consisted of 1 395 720 posts/tweets to Facebook and Twitter. Participants sharing social
media data were slightly younger (29.1±9.8 vs 31.9±10.4 years old; p<0.001), more likely to post at least once a day (42%
vs 29%; p=0.003) and more likely to present to the emergency room via self-arrival mode and have private insurance. Of Facebook
posts, 7.5% (95% CI 4.8% to 10.2%) were related to health. Individuals with a given diagnosis in their EMR were significantly
more likely to use terms related to that diagnosis on Facebook than patients without that diagnosis in their EMR (p<0.0008).

Conclusions Many patients are willing to share and link their social media data with EMR data. Sharing patients have several demographic
and clinical differences compared with non-sharers. A database that merges social media with EMR data has the potential to
provide insights about individuals’ health and health outcomes.